Every flight includes a mandatory safety briefing with the words “put the oxygen mask on yourself first, and then help the person next to you.” There is profound wisdom in those words and I share them at every speaking engagement. Taking care of oneself first is the ultimate fatigue defender. At Caregiver.com, Dr. Selignson’s article warns against caregiver burnout, “We must be able to see our own limitations and learn to care for ourselves as well as others.”
There are several rules that I live by in caring for myself and others. Whenever I travel I schedule a day of rest at my destination and upon returning home. Those days are reserved the same way I’d book any other appointment. I reserve two days a week to awake when my body naturally wakes me up, no alarm clock. Eating well and regular exercise are as important to me as brushing my teeth. While not everyone can abide by my rules, the main point is to consistently take care of yourself, before taking care of others.
In caring for yourself it’s also vital to be aware of “co-worry.” Walking beside a loved one going through cancer makes you a co-survivor. Along with co-surviving comes co-worrying, filled with “what ifs.” What if I get cancer too? What if I get sick and can’t care for my loved one? What if I’m not there when my loved one needs me?
Such co-worries can lead to forfeiting sleep, respite, and support. That’s especially true when caregivers are unwilling to leave a loved one’s side. Remember though, no good work is ever done alone, including care-giving. Occasionally giving up your hat preserves oxygen for the long-haul. Without respite, you risk burnout for yourself and diminished quality of care for your loved one.
Worry and depression are common along the care-giving path. If someone is depressed they are apt to worry excessively. If someone worries excessively, they are apt to become depressed. In last month’s article, I talked about depression being a slippery slope that can result in diminished hope. Caregivers can keep hope in sight by tapping into a wealth of resources. During difficult journeys, hope can be found through support groups, dedicated mentors, respite providers, discussion boards, and taking time out. Using those tools is like giving yourself “oxygen.”
Sometimes, there is a tendency to think of grief only in the context of death. Yet, grief can result from any life-changing event, especially with a loss of control. Children experience those emotions just as much as adults; they too are caregivers in their own way. Sadness, fear, frustration, anger, and confusion are all emotions felt during times of grief and loss. Worries left inside grow inside, and become an ultimate hope-squasher.
Put on your oxygen mask first, give up your hat from time to time, connect with others, and remember to play—there is a child inside each of us that needs it.
Maryann Makekau, Author & Inspirational Speaker (www.becausehopematters.com)
Last month, I wrote about a poem that was sent to me. The poem seemed to characterize hope as having finality. I stated that I don’t believe hope ends with a disease process or in losing a loved one. Conversely, it is what carries us through such painful times. Since writing about that poem, I’ve released another book for life’s difficult journeys, “When Your Grandma Forgets.”
Talking with audiences about this new book resurfaced an avoidance that I’ve seen when discussing cancer—the subject of my other Little Pink Books. Some people are hesitant to discuss cancer or Alzheimer’s disease. But more often people are hesitant to talk about the fall-out. What if hope diminishes, and a loved one heads down the slippery slope of depression due to the emotional fall out of cancer or Alzheimer’s, or some other difficult journey?
Throughout years of working in the mental health field, I’ve always hoped and believed that the stigma of depression would be erased. Hitting upon another painful journey within families has shown me that my hope is yet to be realized. Our minds are intricately tied to our bodies, what affects one affects the other. So, it’s not surprising that during times of great loss, the feelings of sadness, anger, fear, frustration and confusion take hold of us. Those feelings are inherent parts of grief and loss, and completely normal.
However, when despair parks itself inside someone for too long, clinical depression can result. In the same way that medical attention is necessary when illness strikes our body, it is necessary when it strikes our mind. To deny such a need is like putting hope on a slippery slope—making it more and more elusive. I often compare depression to a dark cloud hovering over someone, blocking the healing power of sunshine. Hope is just like sunshine; hope sheds light into the darkest of places.
Depression can strike anyone, just as cancer and Alzheimer’s are diseases that often strike without warning or explanation. Millions of survivors and co-survivors must weather the course of grief and loss, yet coping styles vary from person to person. Some will weather it without additional fall out, while others will hit a very slippery slope.
Maryann Makekau, Author & Inspirational Speaker (www.becausehopematters.com)
I read an unusual poem recently that presented hope as a double-edged sword. The poet empathized with those who choose to surrender to the fight with cancer; yet their loved ones aren’t ready for them to quit. The poet implored: why must patients bear the burden of a “last hope” laid upon them by loved ones, while enduring ineffectual treatments?
Reading those words reminded me of a doctor I heard about during a visit to the Center for Palliative and Supportive Care at University of Alabama Birmingham. The doctor was known for giving his patients every possible treatment option, including “you can choose to do nothing.” I admired that doctor’s courage in presenting a much less talked about option.
As I continued reading through the poem, I struggled with the concept of hope being presented as a detriment—much like the label of “false hope.” I don’t believe in “false hope” anymore than I believe in “last hope.” Hope doesn’t end with a disease process or with losing a loved one. Conversely, I believe that hope doesn’t end; it is what carries us through such painful times. Hope propels us to go on despite our circumstances.
When we refuse to accept that a loved one chooses to surrender the fight, we are clinging to fear…not hope. Guilt is another binding force; it teases our mind with “what if?” What if the treatment works this time? Yet, we must remember that empathy is tied to dignity. When you empathize with someone you don’t make choices for them—you listen and give them the dignity to choose—even when it doesn’t match what you (or the doctors) think is best.
I have found a new sense of peace and hope; it comes to me through the eyes of children. There is no double-edge sword in the way they view hope. A child’s ability to experience hope isn’t based on what the future might hold, or on the “what if’s.” It is based on the day to day journey with a loved one. Their perception of hope comes in snapshot moments. Adults, however, typically perceive situations based on life experiences and respond based on that baggage.
A child’s view of hope—and life itself—is quite a blessing worth considering. When I wrote the Little Pink Book™ “When Mom’s Cancer Doesn’t Go Away” for my sweet cousin, my heart felt exceedingly heavy for her teen-aged son. To convey hope inside the most painful point of their lives, I knew that empathy and dignity had to be intricately tied together. Through sparks of hope and snapshot moments, I filled their story with treasured lasts, sweet good-byes and eternal hope.
To me, there is no “last hope” or “false hope” in the book of life. When we live with hope and let go with hope, Huge Outcomes are Possible Everyday—that is HOPE!
Maryann Makekau, Author & Inspirational Speaker (www.becausehopematters.com)
When cancer steps back into your life it can send you down a heart-wrenching emotional path. Feelings of anger, confusion, frustration and sadness collide inside your head like the noise of a child banging on pots and pans. Sooner or later though, your mind settles on the reality of the situation. Then hope can get a grip on you.
I’m a firm believer in pity parties. To find hope we sometimes first have to get through a pity party—and often more than one. It’s seems like “party” is a misnomer because crying and withdrawing doesn’t feel like a party at all. Yet, when we allow ourselves to go through it, something cathartic happens—glimmers of hope begin to emerge. A wise friend once said to me, “we can’t always choose what we go through, but we can always choose how we go through it.” That’s the essence of allowing hope to have its grip on you and your struggle.
Through my own struggles and walking beside others, I’ve learned a lot about hope. That hope has been magnified by some amazing people in my path. One friend beat Lymphoma after being told he had a ten percent chance; he’s now a 3-year survivor. At last year’s Young Survival Coalition, I met a number of women diagnosed with stage 4 breast cancer, attending as one-month to five-year survivors.
I prayed alongside others for a woman who was in the battle for the third time, twice with breast cancer, then esophageal cancer. She was told that her prognosis was “very poor.” She’s now more than a year outside the battle and mentoring others newly diagnosed. Her unwavering faith is apparent in her words: “you must be willing to focus on the small miracles, not the darkness.” Then recently, I was honored to meet another woman of unwavering faith. She’s a young mother (and breast cancer survivor) with four children; and now she’s facing stage 4 lung cancer. She boldly claimed total healing before treatment began.
Some would read those stories and say, “that sounds great, but that’s not the case for everyone.” Sadly, that’s true. One might gain a month, another a year or some ten years and more—yet, they’re grateful for every moment. The commonality that I see is their choice about how they go through their struggle. Dwelling on the diagnosis could have resulted in hopelessness. Instead, they all chose to dwell on hope and surround themselves with those who did the same.
Perhaps pity parties should be timed, much like when you give a child time-out. Cancer is a reason to get really mad and time-outs are part of the grief process. There’s a time to pout and there’s a time to shout. Pity parties ought to be followed by praise parties where the focus is on the small miracles, rather than the darkness.
I’d love to see “stage” redefined for patients, as literally: a period or step in a process. That definition infers that you’re going up and forward; now those are hopeful words! After all, isn’t that the reason for treatment, to help patients and their families move on with life again? When hope gets a grip, there’s no telling what will happen—even if cancer steps into your life again.
Maryann Makekau, Author & Inspirational Speaker (www.becausehopematters.com)
Three years ago today, I was standing in my kitchen preparing our holiday menu. That was the day my best friend, Vicki, called to tell me she’d been diagnosed with breast cancer. I’ll never forget how I gasped for air as she simultaneously gasped for words. All she could muster was, “I have cancer. I want to tell my 2nd graders, but I don’t want to scare them.” I gained enough composure to tell her that I’d find the perfect book to help the 2nd graders in her classroom, and that I’d be there for her anytime day or night.
Today, my friend called me again with a cancer diagnosis. This time, however, she was standing in my shoes. Her best friend since childhood received the news today: “you have breast cancer.” As I heard her mirror my feelings of three years ago, that overwhelming air-sucking feeling came over me again. Vicki was painfully confused as she mentally moved from survivor to co-survivor. She hadn’t seen it coming and yet, without any preemptive news flash, cancer had invaded her life again.
At first, I wanted to shout “NO.” I wanted to get mad, really mad at cancer! I wanted to make it go away—I hate cancer revisiting my friend’s life in this way. Within moments of our conversation, I again realized that I have no power to erase cancer. Yet, I do have Hope, and I can ease the pain it creates. I can advocate so that others understand cancer’s impact. I can embrace the children walking alongside adults with cancer—just like when I wrote the book my friend needed for her 2nd graders. I can be a messenger of Hope.
Just yesterday, I booked a plane ticket for Nashville. My purpose was to attend a special outreach for cancer patients next week. I now realize that outreach will be an overflowing vessel of Hope for another outreach. As I pour it out to cancer patients, I will be filled with renewed Hope. That’s the beautiful contagious nature of Hope; as you pour it out, more pours in.
I will visit my best friend and pour renewed Hope into her heart to be magnified for her friend who’s now facing the battle. It’s no coincidence that my outreach event is scheduled less than an hour from Vicki. I believe it is all part of God’s plan to remind me that Huge Outcomes are Possible Everyday—that is the power of H.O.P.E. It can outshine anything, even cancer.
Maryann Makekau, Author & Inspirational Speaker (www.becausehopematters.com)
I remember reading The Little Engine That Could to my children and watching their faces delight over the story’s prevailing hopeful message: “I think I can, I think I can, I think I can….so I can!” Attitude can either be the biggest part of the battle, or the key to rising above the battle. That little book, first published in 1930, has continued to infect millions of children, and adults, with an attitude of don’t give up, no matter what!
Life’s ups and downs can feel much like the rolling train in that story—an uncertain journey where attitude is key. We don’t always get to choose where we go, but we do get to choose how we respond to the journey. Such is the theme of The Little Engine That Could; and that’s been the template for sharing the message of The Little Pink Book that could. After I wrote When Your Teacher Has Cancer, a few early reviewers said that my audience was too limited, and that I’d have to change some things—-like take “prayer” and “God” out.
So, I spent some time researching. Did you know that there are approximately 98, 936 public & private schools; 78 million parents; 38,000 libraries in the United States alone? I’d say that’s beyond a “limited audience” and it didn’t stop there. That Little Pink Book that could led me to create five more titles, embark on 19 book tours in 21 months, and prompt outreach in 16 countries—in classrooms and beyond. “Prayer” and “God” remain, inside every Little Pink Book amongst other helpful healing tools.
Sometimes, we don’t understand our own potential until a catalyst interjects. When my best friend was diagnosed with breast cancer, I resolved to make a difference with hope. That marked the beginning of a Little Pink Book that could. My determination grew as I shared more hope, wrote more books, and believed more in my potential. Becoming a children’s author and speaker came naturally in the sense that I felt led to do it; yet it was a departure from my career in psychological testing and research. In moments of doubt, I tell myself, “I think I can, I think I can, I think I can!” When logic says no, I think of my “survivor” best friend, two family members who are winning the battle, and all my heroes in cancer battles who encourage my path. My heroes have taught me that although my mantra may begin with I think I can, my attitude is the key to knowing I can! I can make a difference with hope!
Last week, with community support my graphic artist and I held 2nd annual events with Starbucks and Buffalo Wild Wings, plus a new event: “Taste of Wellness.” My translator flew in to speak at our new event. Dr. Amaryllis Sánchez’ (Dr. Mari) message of hope in celebrating her mother’s life stolen away by breast cancer, was tied to Mother Teresa’s words: “We cannot all do great things, but we can do small things with great love…”I can do things you cannot, you can do things I cannot; together we can do great things.”
Dr. Mari’s message was a poignant reminder that we must not let our preconceived limits steer the course. Collective gifts, unified in great love, make all the difference. That’s the definition of community, during October and beyond. Inside life’s toughest journeys, we must learn to trust in that small still voice: I think I can, I think I can, I think I can! Never give up!
Maryann Makekau, Author & Inspirational Speaker (www.becausehopematters.com)
Recently during a heavy rain fall, a fond picture came into my mind. When my children were in elementary school they loved to put on their rain gear and stand outside in the pouring rain. Their hope was to catch the raindrops; with buckets in hand, they stood outside until those buckets overflowed. I still treasure that old snapshot!
As quickly as that snapshot came into my mind, my imagination went into overdrive. What if we could catch hope that way? What if hope overflowed from our own lives into others’ lives? And what if our buckets were constantly replenished with hope?
Buckets full of hope—what a beautiful way to picture life! As I’ve traveled the nation sharing my Little Pink Book series, I’ve met some amazing people. I’ve been motivated by survivors who’ve turned struggle into blessing. I’ve been inspired by creative organizations that offer emotional and financial support to cancer patients. I’ve been privileged to meet people who work tirelessly to create resources that deliver overflowing hope. Collectively, they supply a bucket full of hope!
When someone close to you is diagnosed with cancer, it changes your world too. As his emotions take the roller coaster ride, so do yours. As you watch her endure the fight, you want to fight alongside. When you see his strength fade, you wish you could infuse your own—as a gift of hope. As you pray for a cure, you get busy with other tangible ways to make a difference.
TalkAboutHealth’s founder recognizes the invaluable gift of hope. By bringing together patients, caregivers, authors, speakers, educators, physicians and others to share their encounters with cancer, ultimately hope is also shared. Like a concert of falling raindrops, one person pouring out hope provides it for another. The overflowing gift of hope is instantly reciprocated, because when you give hope, you are replenished with even more hope. That’s what I like to call the “infectious quality of hope!”
I encourage you to wait with anticipation for the next rainfall. Grab a bucket and catch some hope! Let it overflow from your life into others’ lives. Through our combined efforts of giving, doing, helping and sharing, no one is ever left without hope—no matter what life brings.
Maryann Makekau, Author & Inspirational Speaker (www.becausehopematters.com)
Hope implies patience, waiting for an outcome, whether it’s a promotion, love, or a cure. It’s another word for positive thinking, our nation’s unofficial state religion. Some think there’s an overload of hope in the American psyche. Author, columnist and breast-cancer survivor Barbara Ehrenreich recently tackled Yankee optimism in Bright-Sided. When first diagnosed with breast cancer, Ehrenreich was struck by the constant chorus of “keep a positive attitude” repeated to her. Ehrenreich points out that there’s little to suggest optimism will help a patient’s outcome. What if for some “anger is an energy,” as Johnny Rotten sang? The French, American, and Russian Revolutions weren’t fought by happy campers.
What do you think? Is it wise to urge breast cancer patients to keep a positive attitude? Is there a danger in investing too much energy in hope? Can darker emotions like anger be put to good use by a patient? Click here to share your thoughts and read the responses.
Post by Nicholas - TalkAboutHealth Blogger and Journalist
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